- CASE FILE
I have motion-induced Mal de Debarquement Syndrome (MdDS), a little known neurological condition for which there is currently no cure.
ABOUT THIS CASE FILE
MdDS is a rare and barely understood neurological condition for which there is currently no cure. There is both motion-induced and spontaneous. I began symptoms of rocking, bobbing, and swaying the day after disembarkment from an 8-day river cruise from Prague to Budapest on July 16 2016. Yes, I have been rocking, bobbing, swaying 24x7 as if I am on a little boat out in the middle of a lake for three years! The symptoms subside when re-exposed to passive motion (driving or passenger). I am fortunate to have received a diagnosis; many who have the condition are mis-diagnosed or spend lots of time and energy and dollars trying to determine what they have. In addition to the rocking, bobbing, swaying of MdDS, the symptoms have most resembled those of a Traumatic Brain Injury (TBI or mTBI): extreme fatigue, declining executive function, cognitive decline and mental fog, emotional dysregulation. My brain seems "off-line" or on hiatus. A year ago I could not pack my own bag for travel and today I manage my life with post-it notes and a timer set in 20-minute increments. Like a TBI, it is an "invisible illness", felt by me and unseen by the observer, often leading doctors, friends, and family members to treat me as if it is all in my head. I am a member of a private Facebook page where these symptoms I've reported are common. According to the research, it happens mostly to females ages 30-60, but there are also men who suffering from this debilitating, life-changing condition. Research for MdDS is limited, there is no cure, and an understanding of what needs to be treated is still unclear to me and the many doctors I have seen. It has been called: an enigmatic neurotological disorder (Cha et al 2015); a balance disorder (Ghavami et al 2016); a movement disorder (Dai et al 2017); a neurological condition (Mucci et al 2018); an otolith dysfunction, a hallucination, and a functional neurological syndrome. Dr Cha in most recent research (2018) refers to it as "rocking vertigo". There are currently two treatments offered (Dr Dai's "Readaptation of the Vestibulo-Ocular Reflex" and Dr Cha's repetitive transcranial magnetic stimulation (TMS) over regions of the brain); I have done the treatments available when in some events the symptoms worsened. Others have tried the treatments and as research has shown there may be success during treatment but it is not lasting. To say those of us who suffer from this chronic condition are "miserable" is an understatement. And the condition is not good to have at any age: the 34-year-old male who got the condition on his 29th birthday and sees a future of doom and gloom. And as a 62-year-old female, this is the worst possible time in my life to have something like this impacting my brain in such a significant manner. (see https://mddsfoundation.org for more diagnosing information, facts and research articles)